By Nicole Padron
Hi everyone. My name is Nicole and I am 15 years old, currently in 10th grade. My nine year-old brother, Tyler, has hydrocephalus. He was diagnosed at the age of two, and since then, my life has never been the same. At first it was a challenge having to deal with my brother being “sick”. With his constant doctor’s appointments and visits to the hospital, it became necessary for me to be there for my little sister and brother, and I had to become very mature at a very young age. It was difficult trying to deal with my own worries and questions on my own, and a lot of the time I hid all of my feelings to be there for my family. However, as I became more knowledgeable and educated about hydrocephalus, it grew easier to understand everything, such as how and why my brother had a huge bump on his head, or why he wasn’t able to do certain things most little boys could, like play football. Becoming more aware helped me to educate others about hydrocephalus as well. Spreading awareness to my teachers, friends, and peers has not only helped my community understand this birth defect, but has gotten my community involved as well.
My family has been involved with the Long Island Hydrocephalus WALK for six years now, and my amazing mother, Mia Padron, has been a co-chair of this walk for five of the six years. Running a walk takes a lot of time and an extreme amount of effort. This means the whole family has to pitch in. I am in charge of making the hydrocephalus pins, folding papers, stuffing envelopes, handing out brochures, collecting donations, volunteering at the walk from set-up to clean-up, and anything else my mom tells me to do. It’s a lot of work and responsibility, but I have so much fun with it all, especially when I get my friends involved. Plus, it’s great community service.
Along with becoming involved, the friends that we have made through the Hydrocephalus Association (HA) and the walk are irreplaceable. Our walk has helped families who have been affected with hydrocephalus just as we have. These amazing people are such great support, especially since we know what each other are going through. We have become not only a support system for each other, but one big family. Now that I have been given the honor to be one of seven advisors for Teens Take Charge, I am also looking forward to all of the friends I am going to make; the teens and families I hope to help and support any way I can, and all of the once in a lifetime experiences I have yet to enjoy.
Hydrocephalus is a birth defect that has impacted my life, and it has been a very long and bumpy road for my family and me. However, by turning this “tragedy” into a growing and learning experience, an opportunity to gain community involvement and awareness, something that everyone can benefit from, I can honestly say hydrocephalus has changed my life, for the better.
The Spring 2011 edition of Kite Tales, the Kosair Charities newsletter, features Maralyn Lewis, a nine year old girl with hydrocephalus and pseudotumor cerebri. Maralyn will also be participating in one of this years Hydrocephalus WALKs. The story is on page 4 of the newsletter, which you can read by clicking here.
The Hydrocephalus Association (HA) proudly introduces you to some of our outstanding volunteer leaders – the 2011 WALK and Special Event Chairs! These men and women spend countless hours coordinating HA WALKs and special events in their communities. They possess great leadership, passion and initiative which in turn allows HA to increase its investment in education, support and research. We plan to feature these exceptional volunteer partners over the next several months, giving you the opportunity to get to know them.
By Chiara Rocciola
My name is Chiara and I am thirteen years old. My experience with hydrocephalus is with my sister. My sister was diagnosed with hydrocephalus before she was even born. Two years later I was born into a loving family and I had the most amazing sister ever! I remember when I was little that sometimes I had to go to my grandparent’s house because Lexi was in the hospital. When they were gone I had so many questions like: is Lexi OK? When do I get to see my mom and dad? And just waiting until the moment when I get to see them all again. Read more
By Lisa Sun, HA Administrative and Program Assistant
Our Boozle bear, who has hydrocephalus, was created by Dory Kranz and Sarah Zadorozynj. Boozle is used by doctors, nurses and parents to teach children about hydrocephalus and how shunting works. Boozle comes with a detachable ventriculo-peritoneal (VP) shunt which is donated by Codman. Anyone can learn to perform “surgery” on this bear. Since their creation, Boozles have been featured at WALK sites, in school meetings, various conferences, and even as a childrens’ workshop at our biennial conference. Kids have taken these bears to school, and Boozle is a great way for them to educate their peers about hydrocephalus. Read more
On August 15th, 2011, The Chicago Sun-Times Published an article about Eleftherios (El) Giannisis and his successful treatment for Normal Pressure Hydrocephalus (NPH). As happens all too often, his NPH went undiagnosed and it was the efforts of his daughter, Demetria Giannisis that finally led to diagnosis and treatment.
By Tom Smith, HA Adult Services & Outreach Coordinator
Best estimates indicate that there are 350,000 persons in the United States living with Normal Pressure Hydrocephalus (NPH). Roughly five percent of persons diagnosed with Alzheimer’s or Parkinson ‘s disease actually have misdiagnosed NPH. NPH mostly affects people over the age of 55 and quite often looks like the results of the natural aging process. Read more
Head Above Water
By Tracy Taback
Today, I am a healthy 31-year-old woman who just happened to be born with hydrocephalus (water on the brain). My condition lay dormant and went undetected for 23 years until one morning I woke up and drove to work but was unable to get out of my car when I arrived. I remember sitting in the parking lot, scared out of my mind, thinking that something was obviously wrong and had been for awhile, but I had chosen to ignore it. Read more
by Tom Smith, HA Adult Services and Outreach Coordinator
A congressional hearing was held yesterday in front of the House Subcommittee on Africa, Global Health, and Human Rights discussing research and treatments for hydrocephalus that could benefit children around the world. Benjamin Warf, MD, a pediatric neurosurgeon at the Children’s Hospital in Boston, MA was on the panel of experts testifying in front of the committee. Read more
There is a growing body of work surrounding Normal Pressure Hydrocephalus (NPH) that simultaneously moves us forward and illustrates how far there is to go. Two recently published studies aim at establishing parameters of the effects of NPH specifically on cognition, and generally, on the effect that treatment can have on quality of life. Read more